Stage 2B with positive nodes
Husband here.
If there's already a thread for Stage 2B with positive nodes, I apologize, as I missed it.
I see a lot of discussion between ladies with Stage lll and between ladies with Stage l and a lot of dialogue for Stage lV only----but not much for Stage ll.
I was interested in reaching out and finding what everyone's experiences have been with their oncologists' prognoses and treatment recommendations as well as your attitudes and coping strategies.
Really, ANY feedback from anyone with a pathology that has any similarity to my wife's.
I'm trying to support her the very best way I can and welcome all help.
Thanks.
Comments
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I am a stage IIB with 2 positive nodes, same size tumor, but was also Her2+. My oncologist gave me an excellent prognosis based on treatment with chemotherapy, Herceptin and hormonal therapy. I did not receive Adriamycin due to its cardiotoxicity because Herceptin carries its own risk of congestive heart failure, many oncologists instead recommend Taxtere and Carboplatin (or Cytoxan) for those who will also need Herceptin. I am followed with PET scans, tumor markers (twice yearly now), bone density scans periodically due to osteopenia that has worsened after chemo and hormonal therapy - I receive a Prolia injection every six months in an attempt to halt any further bone loss. I am not blindly optimistic about the future, I am aware of recurrence risk, particularly in light of my Her2+ status, but I am living life one day at a time because that is all we get. Do you have specific questions, or are you asking generally what we have heard from our oncologists? In terms of attitude and coping strategy mine has been shaped by being a military spouse which has made me very independent, and also having lost my father and brother both to stage IV cancer. I have not been particularly emotional about my diagnosis - I am more of a logical and analytical person, I have just pressed on through surgery and treatment without needing a lot of hand holding. However, I realize that is probably not the norm and many women need more emotional support than I do. I enjoy every day and try to be productive and have fun, I try to be helpful to others, I recognize there is much I can't control and I no longer worry about those things, I have seen how fragile and precious life is and if all you do is worry about the future then you are not really living. I was determined from the start to not allow breast cancer to "have" me - I was going to "have" it, and then do all I could from a treatment persepctive, and let the chips fall where they will. I am more careful about caring for myself - I try to eat well and exercise. I do things that make me happy and resist doing things that don't - I make sure my family and friends know that I love them. I have tried to carry on with as much normalcy in my every day life as I can, it makes things easier for me and my husband and children. Wishing you and your wife the best.
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Wow, SpecialK... What a terrific response. Thank you.
The 2 Oncs that we saw (1 local where we get treatment and our 2nd opinion at MSK) gave us encouraging prognoses. And they were unsolicited (I was afraid to ask in front of my wife).
When we met our MO for the 1st time, he greeted us and before he sat down he said "1st of all, I have reviewed your pathology report and you are going to be OK".
My wife broke down and said "I have to be there for my girls" to him.
It was what we needed to hear at that moment. We needed HOPE more than anything else at that moment.
But of course, because the positivity flies in the face of our greatest fears (which have been fueled by doom and gloom crap all over the Internet), we can't quite embrace it.
He went over his recommended treatment plan with us and told us it is what he would give for HIS wife or sister.
He was very kind and reassuring... Very positive without guaranteeing anything----and I didn't press him on what 'OK' meant. He called the chemo 'insurance' and said that 'we are going for CURE'. I know there is no cure----but believe that individuals DO get cured in that their cancer never comes back.
He recommended we get a 2nd opinion from one of the 'big centers' and he made a phone call to someone from MSK in NYC right then. He said he was interested in what THEY would say----and that if we wanted to go with a different treatment, that he would deliver it to us so we could be close to home. We liked his confident security in his recommendation and his insistence for us to check up on him, so to speak.
The Onc at MSK met with us and she asked if we had kids. We have 2 young girls and told her that we hadn't told them anything yet.
She then proceeded to say that we should reassure them. She said that we could say that mommy will be OK (again with the OK thing)----to which I very honestly said: "We like when people tell us that"... her reaction was one of almost surprise----and she added: "well, the odds are strongly in your favor" (favor for WHAT, I didn't ask... didn't want to ruin a positive moment)... She made sure to say that 'there are no guarantees' after she recommended her treatment plan (which was the same DD A/C and a choice between DD Taxol x4 or 12 weekly Taxols). She explained the private infusion rooms at MSK and the experienced staff----but understood the value of staying close to home for Tx. She said the meds would be the same. She did not push for a port like our MO did (we wound up getting a port placed). We chose local Tx.
I asked my wife what she wanted for X-Mas and she said to 'not worry so much'... I agreed. I think we both look outwardly relaxed---- but I go through cycles of varying anxiety. The MOs seemed to be so positive and sites like Cancer Math and PREDICT are pretty darned positive (with the treatment plan). My pessimistic side just always pokes at me----- and for no positive gain to be had.
I know they say 'it gets better'... I can't wait for that to happen.
6 months ago, we had just blissfully spent 2 weeks in Disney World and were trying to decide on the theme for our annual Halloween Party.
These were the things on our minds. Then BAM! Everyone has a similar story, I'm sure.
Just trying to find some peace and deal with this in a way that is most helpful and healthy for my wife/ girls.
I need to get my head straightened out with all of this. You sound like you are set (mindset wise). I need to get there.
Thank you so much for your info on treatment. We are trying to 'survive' treatment-----but diet and exercise are going to get special attention going forward.0 -
Hi Colt,
My pathology was very similar to your wife's, except mine was grade 3. My treatment centre is a teaching hospital for one of the best, if not the best, medical universities in Canada. My MO also told me, in a moment where I broke down, that the hardest part was over and that I would be okay. He said that in a year from now all of this would be a distant memory and I would be busy living my life. I am still in radiation but I have already started moving on mentally, thinking about "trivial" things again, like my upcoming wedding!
Of course, there is always a chance of a recurrence, but knowing this just gives you a reason to be happier in the moment, to cherish everything. There is one woman on here who has a signature line that says something along the lines of if you imagine the worst and it happens, you have lived it twice. Very good thing to remember when you catch your mind wandering!
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@rc1: Bless you, rc1! Congrats on the upcoming wedding!
I remember our MO telling my wife after BMX that the 'cancer is out'... There was somerhing powerful and reassuring about that. Surgery was the 'Primary treatment'... That the chemo was just insurance. I also know Tamoxifen will come after that. Don't know for sure about radiation yet.
I know of the Michael J. Fox line about 'focusing on worst case scenario and living it twice if it happens'. Totally true. The best advice makes perfect logical sense. It just takes more time to adopt than I've had... I guess.
I work on it every day. This thread is kind of like an exercise for me towards achieving that.
Thanks.0 -
I can see that! Your posts remind me of the phases I went through so I know you will get there!
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I relate to everything you are saying colt45. Nice to not be alone. Sending you warm and healing energy.
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Stage IIB with nodes here, and grade 3. I refused chemo and rads. I had surgery and Tamoxifen, although I only managed 18 months of that. 4 1/2 years out, still alive, not mets to my knowledge. Point: You never know what is going to happen. I hope your wife makes the best decision for her body. The uncertainty is often the worst of it for me, so you are not alone! It does get better with time. Of course I could die at any time - the same would be true if I had had the treatment.
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22 minutes ago rc1 wrote:
I can see that! Your posts remind me of the phases I went through so I know you will get there!>>>>>>>
That's encouraging to hear, thanks.0 -
@1Athena1:
Have always liked your sig. It's true. Data and the conclusions that are drawn from examining it just suggest correlations. We need the precise cause and effect. That's science. That's where the answer is.
I hope the treatment you decided on is exactly what you needed. I hope this for all.
Bless you.0 -
The one celebrity diagnosed with Stage 2B that I'm aware of is Melissa Etheridge. She had a 4cm tumor with a positive sentinel lymph node (14 other nodes that were taken were clear). She had a lumpectomy (and I only assume rads---though I can't confirm that).
She did 4 rounds of 1 dose dense chemo (can't confirm what drug) and then started dose dense Taxol, but opted out after 1 infusion as she was experiencing neuropathy in her fingertips and as a guitar player, decided it wasn't worth it.
As far as I know, she's doing well 8 1/2 years out from diagnosis.
It's reassuring to have a high profile personality with a similar pathology doing well. It doesn't guarantee anything for another individual, but it's more comforting than hearing how another Stage 0 celeb 'beat cancer'... NOT to trivialize ANY breast cancer diagnosis, it's just that we need to know that nodal involvement is survivable.1 -
Hi Colt, very similar to your wife except grade 3. I am finishing rads and then on to Tamoxifen. It will all soon be behind me and a new better appreciation of life ahead. Good luck to you both!
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Hi
You know, it does get better. It is really still early days--- after the first year, second year, alot of it becomes a memory. I am 4.5 years out and I rarely think about breast cancer. I actually sometimes forget that I ever had breast cancer.... for days or weeks... honestly. But the beginning is hard...it is all new and the worry is so paramount. I think the grass is greener and the sky is bluer and I have dived back into the hectic life I had before my dx with my work, kids, etc.
In the first year or two I did think about it more often- came here more often-- so whatever you have to do to help you through it... but I think my prognosis is excellent, or at least that is what my onc always says, and has said from the beginning. I realize that none of us really know, but I did not really know before I had bc..... so, in a sense, nothing has changed.
Live life... do fun things.... I got a dog..... I try always to be in the "present"... not the past or the future.....
hang in there.
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Thanks, momand2kids. I can use the encouragement. It seems that A LOT of women do well... But you here less about that. It is good that people several years out----even though they don't 'need' the support here as much anymore---come to support the rest of us.
I hope more success stories visit back.0 -
@Stellar919: Thank you for contributing. I hope we are doing the right thing for us, just as I hope you picked the perfect treatment for you. I wish our doctors KNEW what worked best for everybody. I hope we all got what we needed.
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Don't forget about Kylie Minogue! Not sure what stage but I know she had a palpable lump that was initially misdiagnosed because of her young age which to me pretty much guarantees stage 2! She had chemo and finished five years of tamoxifen and is doing very well. There is also Olivia Newton John who had stage 3 apparently.
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I have not been able to confirm specific diagnoses for Olivia Newton-John and Kylie Minogue, though I understand your deductive reasoning regarding Kylie and I have heard that Olivia was Stage lll... I just wish I could actually SEE it printed somewhere. No matter. I don't wish tougher diagnoses on them----but if they did have them----it would be even more encouraging.
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colt - don't know if this hurts or helps, but here is a link with survival stats. It is giving percentages without a specific breakdown by treatment type. Keep in mind when thinking about celebrities, we are usually unaware of the hormonal receptors and Her2 status - these are very important in determining systemic treatment beyond just their stage, particularly triple negative or Her2+.
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@SpecialK:
Thanks. It's true, I don't even know Melissa Etheridge's hormone receptor status or Her2... I saw no mention of Herceptin (though was it available in 2004/ 2005?) for her or any hormone therapy. I agree we don't know. I guess I'm just grasping for positivity when I see someone with nodes doing well.
I checked out the SEER data. My wife is 41. 5 year survival figures don't help much. Even if they look good, it just covers 5 years.
I know breast cancer can come back at any time. But there must be a point even with ER+ breast cancer where there is SOME drop off in recurrence rate, no? Is it 10 years? 12 years? 15 years? Whatever that time is, that is where I would think 'survival stats' would be of most interest to people. Yes, we want to know about 5 years... we also want to know 10, 15, 20, 30, etc. I know that data is harder to come by because treatments change and most women aren't 41 when diagnosed. Even if they never have a recurrence, many women don't have 20 years left. My wife will only be 61 in 20 years, God willing. We need FORTY years. Or more.
I don't mean to vent. You have been most kind and helpful. I just hate this crap.
Thanks again0 -
colt - the majority of women survive BC - that is a fact, it takes a long time to focus on those stats instead of the other ones. Im still not there yet but it does get easier every day. I think its so great that you are informing yourself for your wife, the person who is going through treatment often cannot/will not make decisions so its great that you are guiding her through this process. It is a difficult one but when you get to the other side it will feel fantastic (and you will get there!)
good luck
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Colt - I know you have been on CancerMath but I think the Conditional Survival tool is the one that you may be interested in. Remember, it is not specific to treatments as the Therapy one is, so the figures don't look as good. However, it gives you an idea of how the residual risk of recurrence decreases over time. For example, I am currently only one year post diagnosis and the expected remaining cancer death rate is over four times what it will be when I am nine years post diagnosis. I won't post numbers here as I really believe that wanting to see these is a personal choice.
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@rozem:
I.O.U. 1 hug. Thank you. I ride the rollercoaster everyday.
You are right about my wife as the patient. She wants to just push through these treatments and not allow any other 'noise' in. We just try to be positive and get this work done. But decisions do have to be made and somebody has to look past the treatments in the here and now. That's where I come in, yes.
Thank you for the shot of positivity. I need those... I don't want to be BS'd to---but I DO need reminding of the positives that are real.
Toronto is a beautiful, clean city, btw.0 -
@rc1: I want you to know that I noticed you have responded very kindly many times to me queries.
I am grateful.
Humbled. Misty-eyed. And grateful.
I checked out the conditional outcomes. 9 years out, the remaining risk is 3-4 times LESS for us, too.
I wonder what it means when they say 'remaining risk' after those 9 years. E.g., suppose it said 5% (not our real %)------does that mean that you have a 95% chance of no death by that cancer for the rest of your life and does that get spread over years, I.e., are they saying a part of that 5% is sprinkled in each year OR it's a 5% risk every year?
I ask a lot of questions, don't I?
Lol.0 -
Lol - it is a residual risk so it would be "sprinkled." It is the probability that you die from breast cancer, given the fact that you have already survived nine years with no recurrence.
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PS - this is my understanding. Somebody can correct me if I'm wrong.
I also take offense to the fact that you mentioned that Toronto is a beautiful city. It's not - Montreal is. We also have a better hockey team.
(I'm joking, big rivalry.)0 -
@rc1:
Ha! I swear I was going to comment on Montreal... I have been to Toronto to see a Blue Jays game and the Hockey Hall of Fame. Never been to Montreal, but my parents have and they said it was beautiful and that when my dad's car was rolling down a hill, countrymen poured out from all over to rush and help him. Here in NJ, they would just steal your parking spot!0 -
Bumping in the hopes of getting more responses to the original post.
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Let me say right off the bat I think it is pretty cool that a hubby comes on this board with concerns for his wife. I know my husband is concerned and loving but he would never do that. I am a Stage 2, grade 1 too. I had a microment in the SN. I had a lumpectomy and 33 RADS treatments. My first appt with my BS he said I had a wimpy cancer. I was encouraged by that until I heard he says that to others as well - of course they could have wimpy cancers too. He was surprised when the Path report came back with a micromet in the SN. He said it would get me chemo. It didnt. My ONC ordered the oncotype test because she said ONCs were over prescribing treatment and subjecting women to unnecessary pain and expense. My test came back with a score of 11 and my tumor was determined to be less aggressive and smaller than first thought. I am on Tamoxifen. I plan on taking it 10 years instead of 5. This whole nightmare is hard on your wife and her family - you in particular. Just the mere mention of the C word is enough to scare the daylights out of anyone. We will always have the fear factor but hopefully as the years go by we will be less afraid. None of us believe we are cured and we know there arent any guarantees but we also know BC is no longer a death sentence. Good luck. We are praying for you and your family. Keep the faith. Diane
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@edwards750: Diane, we're praying and cheering for you over here, too. Thanks for your response and blessing. Here's hoping that if we can't KNOW we're free and clear---- that we ARE free and clear nonetheless and that with time, the fear melts away. I hope all these promising oncotype scores and Cancer Math / PREDICT calculations prove to be true and the scary, outdated survival stats get replaced by all of the promising, positive prognostics we are getting.
You're very kind with what you said to me. My wife doesn't know I have this account----she doesn't need to be scared by the questions I'm asking here. I just want to make sure I'm doing everything I can to support her.0
